New, hopeless, and scared of the tilt table

[ringsmackie]

Greetings!

 

I'm brand new to the site - and Dysautonomia as a whole - but I wanted to reach out in hopes of maybe finding some comfort!

As a disclaimer, I know asking for medical advice is against the rules, so I want to be clear that I'm not trying to do that! I just want to explain what I'm going through and see if maybe anyone can relate.

 

For the past 10 or so years, I've had episodes of syncope. I've also experienced low blood pressure, anxiety, and headaches. Recently, however, those symptoms really became bothersome. My presyncope episodes have increased, and I generally feel terrible. I've been to a cardiologist, endocrinologist, regular family doctor, gastroenterologist, and back to the cardiologist. No one has any answers. Here are my symptoms:

 

• Fainting - out of nowhere!
• Feeling like I'm going to faint - also out of nowhere
• Racing pulse - also out of nowhere
• Heart palpitations (feels like flip-flopping, or skipped beats)
• Nausea
• Hypotension (resting rate is around 80/45)
• Hypoglycemic episodes
• Migraines
• Panic attacks/Anxiety
• Dizziness
• Intolerance to cold
• Feet/legs fall asleep super easily

 

I'm a 28-year-old woman, in otherwise good health.

 

My doctor has scheduled a tilt table test in March. I'm scared to death about it. Doctors routinely struggle to draw blood or insert an IV, so any kind of procedure scares me. I had a baby in 2015, and it took 20 IV attempts and 3 epidurals before there was any success.

 

I guess I'm just hoping for some kind of comfort. Like, maybe this isn't such a mystery disease. After the endocrinologist told me he "had no answers" and the cardiologist told me "it's out of his hands," I just feel kind of hopeless.

 

Thanks for any support, stories of similarity, or good vibes to get through the TTT.

[kalamazoo]

You sound like me, I'm 27, a woman and have all the symptoms you have except I get high blood pressure now instead of low. And let me tell you, the tilt table test is ezpz. If you tense up too much it might change your results so try and relax (I know that's hard to do) my table tilt felt basically the way I do every day. Except I was surround by doctors and people who could help if anything happened. That's probably why I like hospitals so much. You're going to feel the same as you usually do, in my experience anyways, since they're just recreating the same effects of your every day life. So really don't worry about it. I didn't get any medical injections or anything, they just monitored me and it was over pretty quickly. I don't know why they'd give you any type of IV since I didn't have one so I would assume it's the same for you. Good luck!

[ringsmackie]

Thanks so much, Kalamazoo! That makes me feel so much better. It's just nice to hear that someone understands what I'm going through. I've had some rough years of people basically telling me that it's a) not their field of study, so not their problem or b ) all in my head. Were you diagnosed with POTS? I'm hoping for no IV - I'm glad to hear you didn't have one!

[kalamazoo]

Yes i waa diagnosed by a doctor in washington, but since then my symptoms have changed and they're finding different things. But I've been sick for about 10 years now. My first 4 were doctors telling me i was crazy and depressed. So i very much understand. I had to bring the paperwork on a table tilt test to a cardiologist and inform him of it to get it lol. Basically diagnosed myself because of this site. A lot of doctors just don't know because it is fairly rare. Find a good doctor who is oj your side and do your own research. My eoctor basically gives me whatever test or referrals i want because she knows how much research i do before hand. No one knows your body like you. Good luck! And seriously almost all of us here have had TTT done and we are all still here so don't worry. It'll be fine and over before you know it!

[yogini]

Did the doctor say you were getting an IV or blood draw?  This is part of some tests, but not all.  If it makes you nervous, ask if you can skip this part. 

[ringsmackie]

54 minutes ago, yogini said:

Did the doctor say you were getting an IV or blood draw?  This is part of some tests, but not all.  If it makes you nervous, ask if you can skip this part. 

No, he didn't say. But when I was younger, they wanted to do a tilt table. They struggled for 2 hours to get an IV in me, so they called it off. I was just assuming that the IV would happen again, but maybe not! I'm scared about the test, but honestly I think I'm more scared that I won't get an answer yet again. I just want to know if there's a name for what I'm going through.

[Lily]

The TTT can be done with or without a blood draw.  They will want blood if they suspect you have a hyperandrenergic component to the mechanisms driving your symptoms.  If not, they probably won't draw blood.  When I had my TTT they inserted an IV a good 30 minutes prior to the test, because doing so during the test will screw up the results.  If I remember correctly, IVs also come in different sizes.   Anyway, you might not get one.  Think positive.  

[yogini]

Unfortunately, the treatment for POTS is usually a complicated process that takes a lot of patience.  Take it from those of us who've been there. Don't put too much pressure on any particular test or appointment or medication.  

[StayAtHomeMom]

I have been sick since July 2015. I had doctors do the same and I had to more or less self diagnosis and request the tilt table. I feared it too. I did have the IV but they never had to use it. It was more for just in case. My technician was very soothing and helped me get through it. It was rough and I was exhausted afterwards. Try to get a ride. But afterwards it was a great sense of relief to be diagnosed with POTS. No more I am crazy and it is all in my head. Good luck and I hope you find your answers either way.

[kalamazoo]

Anyone know what the IV is for anyways? I have hyper pots and was being tested for that but didn't receive any type of IV or even a mention of it. 

[AngelHelp]

The IV is for "rescue medications" in the event of an adverse reaction and gives the team immediate access to treat you with meds that can be vital! At our hospital I work out, it is just generally used per hospital policy or on the ordering physicians standard orders. Definitely talk to your dr to request to opt out if you think it will help calm you. It was reassuring to me! I had my last TTT in November 2016, with an IV, but the team was great and brought up a NICU nurse to stick me. She got it on the second try, a record for me! I was tilted up for 10 minutes and had that awful feeling we get when we feel like we need to lie down, but they were not allowed to lay the table down (generally the parameters of your vitals are set by your doctor ahead of time on this, for example, if your HR went to 200, you get to lie down!). My test was still inconclusive at 10 mins, so I was then laid back down, my IV was flushed and checked and the nurse went to get my cardiologist, who was in the room while the drug injected to stress the heart was administered,  I was tilted back up for 10 more minutes and allowed to lie down when I fainted. It wasn't nearly as bad as others I have had over 20 years, like some that caused vomiting (BE SURE YOU ARE NPO AFTER MIDNIGHT TO AVOID THAT!) Sometimes, a simple request to your doctor or nurse will allow you to avoid parts of the test that scare you. It is so worth having a clearer diagnosis, so just keep in mind that this test is giving more knowledge to your treatment team and knowledge is power! You can do this!!!! 

[KiminOrlando]

Ok, let me start by saying that there are different kinds of TTT and I don't know what kind you are going to get. You may not get what I got. I have hypo POTS and I was afraid of the TTT too. 

I had to get an IV and yep, I am also a hard stick. They told me the IV was there in case I didn't naturally have an episode while I was strapped to the table and wired in to all their monitors. If it didn't happen naturally, they would need to inject medication into the IV that would make my chest pound and make me feel awful, but that nothing bad would happen and they would be there with me the whole time. They needed to figure out what was happening to me. The way they described it, it was scary, but I was glad they told me instead of getting there and then they just start doing it.

I ended up passing out all by myself. I don't remember if they did a blood draw or not. I just remember being relieved that it was over. I don't know anyone who has been through the 'bad' version of that test, but I am sure there are some on this site.

What I can tell you is the fear of that test was the worst part of it for me. However, that test was the first step to being taken seriously by medical professionals and getting treatment that made my life better. 

Ask some questions to find out what the IV is for. Your test may not be like that at all, but I wanted to say something so you would know to ask. I agree about not driving yourself - if you pass out you will feel terrible. If they give you meds to try to trigger something, you may feel awful. Just the stress from worrying about the test may fatigue you.

It is a long road to get diagnosed and treated for dysautonomia- and that first big step can be tricky. 

I feel like I have just made things worse. You may get lucky and find out they never were planning to give you meds to trigger an episode. I know they don't do that all of the time because I have had other TTT and they didn't. 

Or I could find out that first doctor just liked to torture me and there really isn't a 'bad' version of this test. ☺ After all of that, his treatment plan was for me to get on a treadmill. I remember thinking, "if I could do that, I wouldn't be here!"

Best of luck!

Kim

[Lily]

I had an IV inserted because my doctor suspected hyperPOTS and wanted to see what my plasma norepinephrine levels were when standing.  He said that just inserting a needle will make NE rise, no matter how easy it is for you.  Therefore they insert an IV at least 30 minutes before the TTT to remove a potentially confounding variable from the experiment.

[ringsmackie]

Thank you, thank, thank you to everyone who chimed in! You are wonderful reminders to stay positive, and I hope I'll remember your encouraging words when the ttt actually happens! Less than a month away!

Do my symptoms (in the original post above) sound like what any of you have gone through? Just wondering if maybe I'm close to finding an answer after all these years!

[kalamazoo]

Obviously I'm not a doctor but you sound like you have pretty standard POTs symptoms. I have hyper pots so my symptoms are different, but still similar. Good luck! 

[Ywilson9]

@ringsmackie

Hang in there.  You are ever so close to getting answers, which will bring you so much peace and get you closer to feeling better.  My symptoms mirror yours, except I have hypertension and not hypotension.  I also have more symptoms that are not on your list.   I am not sure what kind of TTT they are ordering for you, but I have had two different types of autonomic tests done at Mayo Clinic in Scottsdale.  For the first TTT, I don't remember an IV whatsoever, I remember EKG sticky pads, pulse ox checks and a cool blood pressure monitor that took my blood pressure at every heartbeat.  For part of the test they had me take deep breaths into a tube to measure respiratory function, and a part of the test where they put a heat pad and tried to measured any sweat into a collection device.  The guy who performed the test was so nice, we had wonderful conversation and he played soothing music for me during the test.  The second test they called it a Catecholamine screening where they were looking for elevated levels of adrenal production. For this one they did have to put and IV in and simply did a blood draw after 30 minutes of resting, and then 10 minutes after standing. From test 1, they easily diagnosed my POTS.  From test two, they confirmed that my body produces an elevated level of epinephrine just from standing up.   We are still searching for some answers on an auto-immune response that my body is having, but being diagnosed with POTS has actually brought some peace as weird as that sounds.  I can stare at those list of symptoms and know that it is POTS causing them, which is much more comforting than the fear of the unknown.  I read somewhere that 90+% of POTS patients are misdiagnosed with anxiety/depression before they diagnose POTS.  In my case I really do have some anxiety and depression, but it is to be expected when a normal, healthy person gets their life turned upside-down by all of these symptoms that seem to come out of nowhere.  I am seeing a great psychologist and that is helping me cope with these changes in my life.

[Awkwardspondy]

I had an IV inserted for my TTT so they could give me fluids after fainting. I have been fainting since I was a toddler and am now in my mid 20s, so this test was long overdue. Anyways, they started the IV before the procedure and gave me half a bag of saline in the procedure room after fainting. I had a very hard time recovering, so my nurse started a new IV in recovery for more fluids because my original one stopped working...grrr

I would not have been able to leave the hospital without the IV fluids, because everytime I tried to sit/stand up, I started to faint again. The TTT resulted in a diagnosis of POTS and neurocardiogenic syncopy  (NCS).

[ringsmackie]

Thanks again to everyone who shared their story! I don't think there are any doctors here who believe in this sort of thing. I was diagnosed with NCS (without a TTT) about 15 years ago. I mentioned to it a doctor in the town I live in now, and he laughed in my face. So, I think I'm nervous about being misdiagnosed above all else.

Interestingly, I had a mini tilt table test today! I was at the dentist and they laid my chair back to do some dental work, then lifted me back up to get an x-ray. I fainted when they lifted me back up. Sounds weird to say I was excited about fainting, but I think it may be a good sign that we're on the right track!

[SScott]

I had a TTT several months ago and was diagnosed with POTS. I wasn't really nervous for the test, just ready for some answers. I had an IV , the nurse told me just in case they needed to raise my heart rate in case of an emergency. I was in a lying down position for 10-15 min & then was in a standing position. This portion of the test was supposed to last 45 min unless something happened. It took me less than 10 min in this position until I passed out. The nurse said my heart rate dropped to the 40's. Before this I have never fainted, but had so many symptoms. Palpitations, heart flutters, chest pain, left arm numbness, extreme fatigue, light headedness, brain fog, bummed out mood, nervousness in my chest, and panic attacks. Basically when my blood pressure dropped my heart would be working harder causing all my "fight or flight" symptoms. I was prescribed midodrine to help ease these symptoms. Midodribe has been a life saver, but the side effects take some getting used to ( chills and constant goosebumps, and a tingling itchy scalp) 

[SarahA33]

Hi, Ringsmackie - sorry I'm late here but wanted to welcome you to the forum! Hopefully you've recovered from your trip to the dentist - are you feeling okay now?

 

5 hours ago, SScott said:

I had a TTT several months ago and was diagnosed with POTS. I wasn't really nervous for the test, just ready for some answers. I had an IV , the nurse told me just in case they needed to raise my heart rate in case of an emergency. I was in a lying down position for 10-15 min & then was in a standing position. This portion of the test was supposed to last 45 min unless something happened. It took me less than 10 min in this position until I passed out. The nurse said my heart rate dropped to the 40's. Before this I have never fainted, but had so many symptoms. Palpitations, heart flutters, chest pain, left arm numbness, extreme fatigue, light headedness, brain fog, bummed out mood, nervousness in my chest, and panic attacks. Basically when my blood pressure dropped my heart would be working harder causing all my "fight or flight" symptoms. I was prescribed midodrine to help ease these symptoms. Midodribe has been a life saver, but the side effects take some getting used to ( chills and constant goosebumps, and a tingling itchy scalp) 

Welcome, Sscott - I have the same side effects from midodrine. Do you take it regularly?  There is another medication you could look into, Florinef.

On 2/8/2017 at 5:18 PM, Awkwardspondy said:

I had an IV inserted for my TTT so they could give me fluids after fainting. I have been fainting since I was a toddler and am now in my mid 20s, so this test was long overdue. Anyways, they started the IV before the procedure and gave me half a bag of saline in the procedure room after fainting. I had a very hard time recovering, so my nurse started a new IV in recovery for more fluids because my original one stopped working...grrr
I would not have been able to leave the hospital without the IV fluids, because everytime I tried to sit/stand up, I started to faint again. The TTT resulted in a diagnosis of POTS and neurocardiogenic syncopy  (NCS).

Hello, Awkwardspondy - welcome!

 

[SScott]

15 hours ago, SarahA33 said:

Hi, Ringsmackie - sorry I'm late here but wanted to welcome you to the forum! Hopefully you've recovered from your trip to the dentist - are you feeling okay now?

 

Welcome, Sscott - I have the same side effects from midodrine. Do you take it regularly?  There is another medication you could look into, Florinef.

Hello, Awkwardspondy - welcome!

 

Thank you, SarahA33! I take my thyroid medicine in the mornings, wait 2 hours and take it and then take it again 4 hours after that. My side effects got a little better after taking it everyday and my goosebumps eventually started coming in patches on my arms. But they never completely went away. I found out I was pregnant about a month ago and stopped taking my midodrone. I will be going to my first prenatal appointment in a few days, so I will definitely ask about my options.